Cystic Fibrosis to benefit from walk
April 8, 1998
Ames residents and Iowa State students will break out their walking shoes on Saturday to help out the Ames chapter of the Cystic Fibrosis Foundation.
On May 2, the foundation will be holding its second-annual “Great Strides — A Walk to Cure CF” at Brookside Park.
Registration begins at 9 a.m., followed by the walk at 10 a.m. All participants are encouraged to collect donations before the walk.
“The walk is a nationwide fund-raiser that raised $10 million annually,” said Michelle Hall, head chairwoman of Ames’ Cystic Fibrosis Foundation.
Last year, the chapter raised $22,000, the largest sum of money raised nationally by any one-year event. But Hall said the foundation’s expectations shoot beyond last year’s total.
“Our goal this year is to raise $30,000,” she said.
According to the Wall Street Journal’s Smart Money magazine, cystic fibrosis is one of the top 10 charities because all donations are used for funding research.
“Even though cystic fibrosis is not well-known, it is listed as the No. 1 genetic killer,” Hall said.
Cystic fibrosis is an inherited genetic condition which affects primarily the lungs and digestive system. According to a press release, it is one of the most common lethal genetic diseases in children.
“Years ago, the disease was called ‘child killer’ because they never conducted research to see what was actually causing the child’s death,” said Hall, whose two-and-a-half year old son, Alex, has CF. “Ten years ago, the average life expectancy was 10 years, but now the life expectancy is 31 years.”
Hall said one out of 25 parents is an unknown carrier of the disease, which equals one out of every four pregnancies.
According to the Internet, parents who have one copy of a faulty gene and one copy of a normal gene are carriers of CF. Carriers have no symptoms and remain free of the disease.
Two carriers who have a child together contribute one copy of the CF gene. If they both contribute a copy of the faulty gene, their child will have CF.
Neither Hall nor her husband are diagnosed with CF, nor have had prior knowledge of CF in their family histories, she said. They were, however, able to trace the gene to Hall’s side of the family.
Children who live with CF do not possess any physical characteristics of the disease; in fact, people who live with the disease have a normal life, she said.
“If you saw a child walking down the mall with cystic fibrosis, you would not know anything was wrong,” Hall said. “[Alex] can do anything that he wants to do, such as going to school, but we have to take preventive measures first.”
CF is a costly, “high-maintenance” disease. Most children diagnosed with CF take seven medications a day when they are well and up to 12 medications per day if they are ill.
“We also have to do breathing treatment, physical therapy and monitor his physical activity every day. If he is ill, we may have to do it five times a day,” Hall said.
CF presently is incurable. Hall said a cure will be developed when the defective gene is corrected.
“We are realistically looking at a cure within the next five years,” she said.
Three CF treatment centers are accessible in Iowa, including one each in Ames, Des Moines and Iowa City. The University of Iowa’s University Hospitals and Clinics is one of the largest research centers in the nation.
For more information about the Walk-a-thon contact Steven and Michelle Hall at 233-5884.